Monthly Archives: November 2013

I hope that all of you have a wonderful Thanksgiving! I hope that it is filled with love, laughter, good food, family, friends, joy, etc. I hope that pain, sickness, anxiety, etc. are not at the forefront of your mind. I hope that, despite the trials, tribulations, pain and suffering, you have things that you are grateful for and that you can focus your energy on those things, no matter how small they may be.

This Thanksgiving, I am thankful for the following:

My health. This is the first Thanksgiving since I got Floxed that I am as healthy as I was before I got Floxed. I was okay a year ago, but I wasn’t 100% yet. I’m 100% healed now. It feels good. I am immensely grateful for my healthy body and mind. I will never take my health for granted again.

My family. I am lucky that I have a wonderfully supportive family. They have always loved me, I have always loved them, and I am incredibly grateful for them.

My friends. I have gained some wonderful friendships over the last year. A lot of those friendships have been with fellow Floxies who I only know through the internet. Even though those friendships aren’t in-person connections, they’re still valuable. I enjoy the camaraderie that I have with fellow Floxies. I appreciate that there is a community of people who understand and support each other through the difficult journey of being Floxed.

I am thankful that each of my Floxie friends is making it. You guys are survivors. Just putting one foot in front of the other is difficult for many of you, I know. But I’m glad that you do it. I’m thankful that you keep going, keep trying and keep fighting.

I’m grateful for my non-Floxie friends too. Your love, laughter, support and caring mean the world to me.

FloxieHope. I’m thankful for the success of this blog. I don’t know how blog success is measured in blogger universe, but in my world, reaching as many people as I’ve reached since starting FloxieHope in June, 2013 is amazing. I’m thankful that I have a platform through which I can reach out to people, share information with them, and let them know that they are not alone and that they will survive.

I am thankful for all of the people who have written their recovery stories for FloxieHope. THANK YOU and CONGRATULATIONS on your recovery!

I am thankful for Chandler Marrs of www.hormonesmatter.com for publishing some of my essays about fluoroquinolones on Hormones Matter.

I am thankful for Arjun Walia of www.collective-evolution.com for publishing some of my essays about fluoroquinolones on Collective Evolution.

I am thankful for everyone who reads FloxieHope. Thanks. 🙂

I am thankful for the journey. All of it. Even the crappy parts that were unpleasant at the time, I’m as grateful for them as I am for the good things. Without any of it, I wouldn’t be where I am now. I’d like to think that I’m doing alright now, so I’m thankful for everything that has led me to this moment.

Of course, I’m grateful for a million other things. One thing that meditation has taught me is that I can find beauty and gratitude in the smallest things, even in the pleasure of the breath. Those little things that I’m thankful for are too numerous to list. Please know that I am thankful for them though.

The disbelief that we face when telling people about our reaction to FQs is frustrating beyond belief. People assume that we’re wrong, or lying, or crazy conspiracy theorists when we tell them that an antibiotic caused our body to go completely hay-wire. We’re not wrong, crazy, lying, etc. The human body is just exceedingly complex and, unfortunately, poorly understood, and the effects of fluoroquinolones on our body are devastating. Here is an essay that I wrote about the topic of being thought of as a conspiracy theorist for shouting about the dangers of FQs. As always, shares are greatly appreciated. Thanks so much for reading it!

Data is important. It is important for getting the symptoms of Fluoroquinolone Toxicity recognized. It is important for making connections between fluoroquinolones and the variety of ailments that are brought on by fluoroquinolones. It is important for assessing the real risks and dangers of these drugs.

When you have data, you have numbers instead of stories or anecdotes. Stories and anecdotes are important, but they are not appreciated or paid attention to like numbers. Anyone who is part of the “Floxie” community knows that, for example, losing the ability to sweat is part of floxing, but we don’t know how many people lose their ability to sweat, or feel anxious, or suffer from insomnia or experience an increased heart rate, etc., so we need numbers – we need data to tell us that information. These surveys will give us some data. Your help in completing them, and passing them on to fellow Floxies, will be GREATLY appreciated.

THANK YOU to any of you who take the time to complete these surveys.

In order to draw any statistically significant conclusions from the Lucine Health Sciences survey, a minimum of 500 people need to complete the survey. The survey being conducted by UCSD is seeking 10,000 respondents. We all know that there are thousands of people who have been adversely affected by fluoroquinolones. However, getting them connected with these surveys may not be easy. I would like to ask for your help. Please forward these surveys to as many people as you know who have taken a fluoroquinolone – ESPECIALLY those who are not involved in the Facebook Floxie groups (because facebook is the primary way that I am advertising the existence of these surveys so it is likely that those in the Fluoroquinolone Toxicity facebook groups already know about this survey).

A huge amount of thanks and appreciation should go to Chandler Marrs, Founder of Lucine Health Sciences, Inc. and www.hormonesmatter.com. She created the Lucine Health Sciences survey. She has spent hours creating this survey and she will spend hours sorting through the data and drawing statistical conclusions from it. If you have any questions or concerns regarding the survey, please don’t hesitate to contact her at info@hormonesmatter.com. If you would like to donate to Lucine Health Sciences / Hormones Matter as a sign of your appreciation for Dr. Marrs’ hard work, donations will be greatly appreciated. You can donate via credit card or paypal using this link – http://www.hormonesmatter.com/crowdfund-hormones-matter-buy-unsubscription-now/

Even though it’s written at a level that most people can understand, there are a few terms that I’m assuming aren’t known by the average person reading this blog. So, I have taken the main points from the study, as I see them, and explained them to the best of my ability. Basically, I did the Google and Wiki look-ups so you don’t have to.

Here are the main points of the article:

1. “There is a significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin dosage regimen but not with gatifloxacin.” What is lipid peroxide and do we want our levels to be high or low? Wikipedia tells us that, “Lipid peroxidation refers to the oxidative degradation of lipids. It is the process in which free radicals “steal” electrons from the lipids in cell membranes, resulting in cell damage.” (1) Basically, lipid peroxidation is not something you want going on in your body. You don’t want your lipids to be degraded via oxidation. You don’t want cell damage. Drugs that significantly increase levels of lipid peroxide are hurting you – at least on that level.

2. “There was substantial depletion in both SOD and glutathione levels particularly with ciprofloxacin.” Superoxide dismutases (SODs) “are enzymes that catalyze the dismutation of superoxide (O2−) into oxygen and hydrogen peroxide. Thus, they are an important antioxidant defense in nearly all cells exposed to oxygen.” (2) Additionally, “Within a cell, the superoxide dismutases (SODs) constitute the first line of defence against ROS.” (3) SOD is “Present both inside and outside cell membranes, SOD is one of the body’s primary internal anti-oxidant defenses, and plays a critical role in reducing the oxidative stress implicated in atherosclerosis and other life-threatening diseases. Studies have shown that SOD can play a critical role in reducing internal inflammation and lessening pain associated with conditions such as arthritis.” (4) SODs are necessary for neutralizing the oxidative damage done by reactive oxygen species (ROS) (more on ROS below).

Glutathione is also depleted by fluoroquinolones. Per Dr. Mark Hyman, Glutathione is “the most important molecule you need to stay healthy and prevent disease.” (5) Dr. Hyman notes that glutathione depletion “leaves you susceptible to unrestrained cell disintegration from oxidative stress, free radicals, infections and cancer. And your liver gets overloaded and damaged, making it unable to do its job of detoxification.” Glutathione is an extremely important antioxidant.

SOD and glutathione work together to neutralize oxidative damage done by ROS. Here is a brief description of how SOD and glutathione work together:

SOD is responsible for catalyzing the conversion of superoxide to elemental oxygen and hydrogen peroxide. This transformation is called dismutation, hence the enzyme’s name. Although hydrogen peroxide is also a pro-oxidant compound, it is subsequently converted by the enzymes catalase and glutathione peroxidase to simple water and oxygen. (4)

Without the proper amount of SOD or glutathione in your body, ROS will wreak havoc on your system, causing oxidative stress and damage to every bodily system.

3. “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5%, 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” Antioxidants are molecules “that inhibit the oxidation of other molecules. Oxidation is a chemical reaction that transfers electrons or hydrogen from a substance to an oxidizing agent. Oxidation reactions can produce free radicals. In turn, these radicals can start chain reactions. When the chain reaction occurs in a cell, it can cause damage or death to the cell.” (6) Oxidation is bad, antioxidants are good, cell death is bad – we want plasma antioxidant levels to be high, not low. Decreasing plasma antioxidant status is bad for your health on a cellular level.

4. “In conclusion ciprofloxacin and levofloxacin induce more reactive oxygen species that lead to cell damage than gatifloxacin.” The researchers also note that, “Several in vitro and in vivo study using animals revealed that fluoroquinolones induced oxidative stress by producing reactive oxygen species (ROS).” ROS are described as follows:

Without oxygen, we could not exist. However, in the process of generating energy by “burning” nutrients with oxygen, certain “rogue” oxygen molecules are created as inevitable byproducts. Known as free radicals and reactive oxygen species, these unstable, highly reactive molecules play a role in cell signaling and other beneficial processes when they exist in benign concentrations. But when their numbers climb, as may occur as a result of aging and other conditions, they may wreak havoc with other molecules with which they come into contact, such as DNA, proteins, and lipids. As such, these “pro-oxidant” molecules become especially toxic.

In fact, a prevailing theory of disease and aging states that the gradual accumulation of pro-oxidant molecules, and the harm they incur, is responsible for many of the adverse changes that eventually cause various diseases. These include cancer (possibly triggered by free radical-induced damage to cellular DNA) and inflammatory and degenerative diseases such as Alzheimer’s, arthritis, atherosclerosis, and diabetes. While scientists have not yet reached consensus on the topic, accumulated evidence overwhelmingly identifies increased oxidative stress with age as a source of damage to cellular structure and function. (4)

5. The authors of the study also note that, “The efforts of the endogenous antioxidant enzymes like SOD to remove the continuously generated free radicals initially increase due to an induction but later enzyme depletion occurs by 73.3% and 32.2% for ciprofloxacin and levofloxacin respectively, resulting in oxidative cell damage. Hence when the generation of reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death. In the present study the repeated administration of CFX (ciprofloxacin) (recommended dosage regimen of CFX for UTI) resulted in increase free radical adduct generation by CYP450 mediated metabolism that cumulate and may result in increased ROS and substantial reduction in antioxidant defense.”

I think it’s a pretty damning article. It’s easy to read and understand. It doesn’t answer all questions about the damage done by fluoroquinolones, but it does a nice job at describing some of the issues that go on in the body when fluoroquinolones are ingested. I suggest that you bring a copy to your next doctor’s appointment.

Do you remember that scene in The Matrix where Neo (Keanu Reeves) is offered the pills by Morpheus (Laurence Fishburne)? He has the choice, he can take the red pill and see the real world, or he can take the blue pill and remain in the façade world, the Matrix. He takes the red pill and he breaks out of the fantasy façade world and enters the real world – a place of destruction and suffering.

I took the red pill. I actually took 14 red pills. I’m not sure which one triggered the reaction in my system that changed my perspective entirely, but I see the world differently now, as a result of being floxed. It would be horribly narcissistic for me to say that I see the “real” world now and that few others do, and I don’t mean that. What I mean is that I see the world differently now than I did before, and that there are some things that I believe to be true that never even occurred to me before. I broke out of my own personal Matrix, with those pills; those 14 fateful, life-altering pills.

This perspective shift is not unique to me, or to being floxed. Whenever people experience a betrayal, whenever something that they assume is safe and protective turns out not to be, their perspective changes and they see the world differently. Usually this is a bad thing. People become jaded and bitter, assuming that they are going to get hurt again because they got hurt in the past. I would like to think that this hasn’t happened to me. I’m still pretty trusting. But I do see things differently. I’ll let you judge for yourself if these things that I now believe are jaded and bitter or if they reflect the “real” world.

I now see:

No one is looking out for patients. The FDA isn’t (duh). Doctors, Pharmacists and the other people directly involved in the medical system aren’t. The legal system isn’t. No one is. The medical system doesn’t get to be the 4th leading cause of death of Americans by having the proper checks and balances that focus on patient safety and protection. (Of course, there are plenty of individuals who are looking out for the best interest of patients, but the system, as a whole, is not.)

Much of medicine relies on magic, not science. Officially, the mechanism by which fluoroquinolones cause tendon, CNS, kidney, liver, etc. damage is unknown. (source 1) Scientists and doctors state, most of them truthfully, that they have no idea how these drugs mess people up. It is also claimed that much is unknown about the way these drugs work to kill bacteria – the thing that they are supposed to do. If the mechanism by which a drug works, and sometimes doesn’t work, is unknown, the reliance is on magic and faith to get the desired outcome, not science. Doctors claim that their pills and potions are backed up by science, but they’re not. They’re backed up by faith in a broken system. BTW – the mechanism by which fluoroquinolones both kill bacteria and damage every cell in a person’s body is by forming a poisonous adduct to DNA. This was found, then immediately ignored, in 1998. Here’s the article – http://www.jbc.org/content/273/42/27668.full (source 2)

Doctor’s rely on anecdotal evidence all the time, but patients aren’t allowed to.

No matter how many peer-reviewed, scientific journal articles show the danger of a drug, doctors will believe that the scientific evidence supports its use until it is removed from the market. Similarly, no matter how sick a drug makes people, it won’t be taken off the market unless…. I’m not sure…. Because flat-out causing cancer isn’t enough to get Humira (source 3) and Enbrel (source 4) removed from the market. Perhaps damaging the DNA of humans will be enough to get fluoroquinolones removed from the market (read source 1 and 2), but I doubt that it will be.

Fluoroquinolone damage is everywhere. A large portion of the people who are diagnosed with autoimmune diseases, fibromyalgia, chronic fatigue syndrome, leaky gut syndrome, anxiety, depression, dementia, arthritis etc. are actually suffering from fluoroquinolone toxicity. (Of course, those diseases are real on their own, and there are many factors that cause them, but fluoroquinolone toxicity is one of the causes that isn’t even considered.)

If enough people repeat a mantra enough times, it will be seen as true, no matter what the evidence against it. It almost makes me laugh, reading articles that point out the damage that fluoroquinolones can do to mammalian cells that follow that presentation of damning evidence with the conclusion that they “have an excellent safety record.” (source 5)

I could go on, but I’ll leave it at that.

I have largely healed from getting floxed. I fluctuate between 95-100% of my pre-floxing capacity. Life has continued. As I live my normal life, and feel fine while doing so, the memories from being sick fade. Sickness is no longer my reality. It is no longer shaping my day-to-day life. It is no longer warping my perspective and shattering my trust in the medical system. Normalcy has resumed and the trivial has, again, taken over. It would be easy for me to go back into the Matrix, the façade world where I don’t understand how “mysterious” ailments occur, and to think that the systems that are in place to protect and sustain us are working as they should. Undoubtedly, it would be healthier for me to leave my “Floxie” world behind and to go back to what everyone else considers to be the real world. As a healthy person, I can do that if I choose to.

But I’m choosing not to. I’m choosing to stay in the “Floxie” world. I am choosing the version of reality, of truth, that I had when I was sick. It may not be the healthiest thing in the world for me to do, but it feels like the right thing to do. People are sickened by these drugs every day. Their world is shaken to the core when their health, their pain-free, happy, trusting existence is brutally stolen from them. It seems like the right thing for me to do to continue to see their pain, to acknowledge their struggles, and to fight the broken systems that are perpetuating the sickening of innocent people. It feels right to stay in the dark and gloomy “real” world and fight the Agent Smith’s of the world who want to keep us trapped and sick. So I will continue to do so. The Matrix, with its niceties wrapped in naiveté, is enticing, but I prefer to know the truth.

Perhaps I’m failing to see some grey area, but here are the options that I see for Pharmacists. Either they don’t know how fluoroquinolones work and how they are dangerous, and thus they are bad at their job, or they knowingly give dangerous drugs to children, and thus have the moral compass of invertebrates, or they think that all drugs have side effects and that side effects are rare, which is a fairly poor moral position even if it is fact, or they feel utterly unempowered, which is a poor reason for letting people get hurt under their watch. I am open to hearing other options.

Anyhow, this is an open letter to Pharmacists who fill prescriptions for fluoroquinolones.